By Nancy Koeneman
Madonna Harrington Meyer and the other members of the Alzheimer's Association
East Central Illinois chapter believed they needed to do something more.
The chapter helped those with Alzheimer's disease (and other related dementia)
and their families in many ways -- providing information about the disease
and referrals to those who could provide assistance. But there was something
more to be done.
Alzheimer's disease is a progressive, irreversible neurological disorder.
Symptoms include gradual memory loss, impairment of judgment, disorientation,
personality change, difficulty in learning and loss of language skills.
It strikes people who are usually older than 65, but may occur in people
as young as 40 or 50.
Meyer, a professor of sociology, helped formulate an ideal way to meet the
needs of people who care for a family member with Alzheimer's disease. The
concept was the Alzheimer's Respite Corps (ARC), in which a volunteer would
be matched with households with an Alzheimer's victim. Each week, the volunteer
would come to the home and give a three-hour break to the caregiver.
Harrington had something even more vital to offer the fledgling program
-- an ideal pool of volunteers to get the program rolling. Because her classes'
subject matter dealt with older adults and aging, she had required students
spend some time as volunteers with aging adults. ARC became one of several
options for the volunteer work.
Setting up the program took a little research of similar programs available
across the country.
"We found some that charged for service," Meyer said. "Some
were very small and really offered token respite. Many provided service,
but there was no connection between the volunteer and family. It wasn't
the same person coming to the home each time."
The local Alzheimer's chapter members and board began to draft how their
respite corps would work. They set a few ground rules: The service would
be free, volunteers would commit to a year and work with the same family
throughout and there would be enough volunteers to provide regular service
to as many people as need respite.
"We started developing the program [in the spring of 1994] and created
the entire training program, giving information about the disease, behaviors
of people with the disease and care giving," Meyer said. "We had
to set up how we would recruit volunteers, find the families who need service,
and [set up] a monitoring program that checked on the volunteer and family
to make sure things were going well."
Once all the pieces were in place, the program started up in October 1994.
Feedback was immediate, Harrington said.
Caregivers who were getting a break from taking care of the family member
were impressed by the volunteers and grateful for a chance to socialize,
run errands,or simply get away. Volunteers began creating good ties with
the family they visited each week.
"I think some of them were surprised at how much they got [emotionally]
attached," Meyer said.
After two-plus years, the program is gaining momentum and national recognition,
becoming a model for Alzheimer's chapters across the United States. Meyer
hopes to generate grant dollars that will allow them to develop materials
and distribute them so that it can serve as a pilot for other programs.
The ARC committee has hired a part-time director, Eric Haugen, to oversee
the day-to-day needs of the program, including recruiting and training volunteers,
enrolling families, monitoring the match-ups, outreach and publicity.
Harrington, the founding director, is now serving as an ARC committee member.
Lee Crandall, professor and head of the community health department at the
UI, is now the chairman of the ARC board.
Volunteers are recruited throughout Champaign County, but most of them are
still students from the UI.
"When the program started, Madonna tapped the pool of volunteers available
in the university system," Haugen said. "It just seemed like a
very obvious resource we needed to tap. They are still the largest part
of our volunteers, as much as we try to get community members involved.
And the students are long-lasting and hardworking. They're wonderful."
ARC is connected to the UI community in a number of ways. Many of the Alzheimer's
chapter members or ARC committee members are faculty members, retired faculty
members or the spouse of a faculty member. And many of those coming to ARC
for help are similarly linked.
"I think in part [the connection] is because ARC started here,"
Crandall said. The other reason for such strong involvement by people from
the UI is that the university environment encourages involvement like this,
he said.
Michelle Kesterke, a UI graduate student who served as an ARC volunteer
while she was an undergraduate, found she got more than the required volunteer
experience.
"I gained a second family," Kesterke said. "Even though I'm
not volunteering anymore, I still go see the family."
"I also learned a lot about Alzheimer's and the process [of the disease],"
she said.
Crandall, who concedes he's still new to his position as chairman of ARC,
said he immediately recognized how ARC fills an important gap in health
care.
"And it's something as simple as three hours of relief to a caregiver,"
he said.
ARC is now looking to expand its services to outlying areas and rural communities.
"We've had some success in Ford County," Crandall said.
Yet ARC is butting up against an unusual problem. It has little difficulty
recruiting volunteers, but finds it hard to enroll families that need its
services.
"People don't like to talk about this [Alzheimer's] happening in their
families," Meyer said. "This is a very private disease."
Caregivers also might be reluctant to have a stranger come into their homes
and care for a loved one, and often have a problem with the idea of someone
else taking care of a spouse or a parent, she said.
People also think they need to handle this kind of situation -- a family
member with Alzheimer's -- by themselves, Haugen said.
"A lot of caregivers think it's too soon to enroll in the program,
that they should save it for someone who really needs it. They don't even
know they are the ones who need it most," Haugen said. "We take
referrals [of caregivers who need ARC] from a large spectrum of people --
health care professionals, people affiliated through the [Alzheimer's] chapter,
other resources in the community. But sometimes we have to pursue the family
with informational mailings or meetings. They find it difficult to take
other people into their homes."
It sometimes takes some reassurance, Meyer said.
"We have to let them know it's a free, discreet, full-year commitment
and it's OK to let someone else come in and take a few hours for yourself,"
she said.
Anyone who would like to volunteer, provide support to ARC or knows of someone
who might need ARC services should call the ARC office at 351-1726.
###